Had another O and this time I immediately took Benadryl and aspirin. I feel surprisingly good given two Os so close to each other. I'll have to try the green tea/fenugreek.

I took a Benadryl last time I had POIS. It made me really tired and I could tell it stayed in my system for about 2 days, I just took one pill.

Is there anybody here that has heavy heartbeats at night? Seems that especially right before bed I experience heavy heartbeats. It will beat and than stop for a moment longer than beat again but much heavier, than return to a normal heavy heartbeat.

Had another O and this time I immediately took Benadryl and aspirin. I feel surprisingly good given two Os so close to each other. I'll have to try the green tea/fenugreek.

I took a Benadryl last time I had POIS. It made me really tired and I could tell it stayed in my system for about 2 days, I just took one pill.

Is there anybody here that has heavy heartbeats at night? Seems that especially right before bed I experience heavy heartbeats. It will beat and than stop for a moment longer than beat again but much heavier, than return to a normal heavy heartbeat.

I also get that. I think it's called PVC's. It's usually a benign condition. People get them when they are nervous, or sometimes if you are low in some minerals (magnesium, potasium...).

I get more PVC's when i'm under Pois. I also get more orthostatic hypotension when i'm under Pois.

Hi all, an update on my experiences with niacin. When I first took the niacin (about a month and a half ago), I did so with 300 mg, and had a flush that lasted about one hour. The next day, my POIS was reduced to about 15-20%. So that was promising.

But, I thought that a one-hour flush seemed a little bit long. So, in subsequent attempts, I only took 100 mg or 200 mg. This still produced a full flush, but one that didn't last as long. However, with these, I found that my POIS-reduction was not as significant. So that made me think that maybe the niacin wasn't working for me.

But then, on Friday night, I decided to try 300 mg again. This time, I had an O about 2 hours after taking the niacin, and then the next day, my POIS was reduced to about 15-20% again.

This makes me think that perhaps simply 'experiencing the flush' may not be the sole factor to consider -- one can achieve the flush with lower doses (100 mg/200 mg), but it may be that that the higher (300 mg) dose may be doing other things as well. (E.g., perhaps, using up greater stores of histamine, so that one has a less-strong histamine reaction in response to O.)

So, I think this could be an important thing to consider: 'achieving a flush vs. not achieving a flush' is not the only thing going on, and so we should not focus just on that. Rather, a flush could simply be an outward sign of something else that the niacin is doing, and while a lower dose may still achieve the flush, it may not be as effective at doing that 'something else.'

And, it could be the case that if that 'something else' is something like using histamine stores (or something similar), it could be that the niacin could still have that same effect, even if one built up a tolerance to the flush-effect. In this case, it might be possible that taking niacin every day could be helpful for POIS, even if that lessened the effect of the flush in particular.

Hi all, an update on my experiences with niacin. When I first took the niacin (about a month and a half ago), I did so with 300 mg, and had a flush that lasted about one hour. The next day, my POIS was reduced to about 15-20%. So that was promising.

But, I thought that a one-hour flush seemed a little bit long. So, in subsequent attempts, I only took 100 mg or 200 mg. This still produced a full flush, but one that didn't last as long. However, with these, I found that my POIS-reduction was not as significant. So that made me think that maybe the niacin wasn't working for me.

But then, on Friday night, I decided to try 300 mg again. This time, I had an O about 2 hours after taking the niacin, and then the next day, my POIS was reduced to about 15-20% again.

This makes me think that perhaps simply 'experiencing the flush' may not be the sole factor to consider -- one can achieve the flush with lower doses (100 mg/200 mg), but it may be that that the higher (300 mg) dose may be doing other things as well. (E.g., perhaps, using up greater stores of histamine, so that one has a less-strong histamine reaction in response to O.)

So, I think this could be an important thing to consider: 'achieving a flush vs. not achieving a flush' is not the only thing going on, and so we should not focus just on that. Rather, a flush could simply be an outward sign of something else that the niacin is doing, and while a lower dose may still achieve the flush, it may not be as effective at doing that 'something else.'

And, it could be the case that if that 'something else' is something like using histamine stores (or something similar), it could be that the niacin could still have that same effect, even if one built up a tolerance to the flush-effect. In this case, it might be possible that taking niacin every day could be helpful for POIS, even if that lessened the effect of the flush in particular.

What do others think?

Yes, it's perfectly possible. Niacin has been studied as a potential migraine preventive agent, and in those studies is usually taken every day for few months, and usually at higher doses than 100 mg. But be cautious, because Niacin at high doses can be toxic.

Take a look at this:

" It is not known if PGD2 causes vasodilation of the intracranial arteries, but niacin's ability to abort acute migraine headaches suggests that this might be what is occurring. Old reports cited by Bicknell and Prescott [24], demonstrate that niacin does indeed cause vasodilation of the cerebral and spinal vessels, and that intravenous administration increases the rate of intracranial blood flow in human beings for 20–60 minutes without any significant change in blood pressure. Unfortunately, there have not been more recent reports examining the effects that niacin has upon cerebral blood flow in human subjects."

"Some of the reports did demonstrate prophylactic benefits when niacin was administered orally every day. It is now recognized that a deficit of mitochondrial energy metabolism (i.e., impaired mitochondrial phosphorylation potential) plays a role in the pathogenesis of chronic migraine headaches [28]. Niacin maintains adequate mitochondrial energy metabolism by increasing substrate availability to complex I [29], and this is how it might function as an effective prophylactic agent for migraine prevention. Two other nutritional agents (riboflavin and coenzyme Q10) augment complex I of the mitochondrial respiratory chain, and have been subjected to clinical trials demonstrating their effectiveness for the prevention of migraine headaches [30-32]. A deficit of mitochondrial energy metabolism may play a role in the pathogenesis of migraine. Since niacin improves mitochondrial energy metabolism by increasing substrate availability to complex I, it might also be an effective agent for migraine prevention."

The only thing about fenugreek is I can't take it before bed cuz it'll keep me up all night. If I take it around 1pm I'll be able to go to sleep by midnight. So I generally take 2 pills in the morning and 2 around noon.

Yes, it's perfectly possible. Niacin has been studied as a potential migraine preventive agent, and in those studies is usually taken every day for few months, and usually at higher doses than 100 mg. But be cautious, because Niacin at high doses can be toxic.

Actually, I think we should be more specific with regard to claims about 'high doeses of Niacin'. Obviously, it is important to be cautious in taking any supplement. However, in pretty much all the different sources I've looked at, the 'liver-risky' dosage is often listed at 3 g (= 3000 mg) per day. The lowest number that I've seen anywhere for a 'liver-risky' dosage is 1 g (= 1000 mg) per day. On top of that, it is specifically the slow-release form of niacin that has the most risks for the liver. As such, from what I've read, it seems that taking up to 1000 mg per day of the 'regular' (i.e. 'flushing') variety of niacin does not appear to be dangerous for the liver. And so 300 mg per day would certainly seem to fall well within this non-risk range.

If I'm wrong about this, please correct me -- we shouldn't gloss over risks, but we also should avoid over-stating them.

The only thing about fenugreek is I can't take it before bed cuz it'll keep me up all night. If I take it around 1pm I'll be able to go to sleep by midnight. So I generally take 2 pills in the morning and 2 around noon.

I noticed it too but now after a month of taking i can take how much i want before bedtime and i sleep very well.

I've got a question: is it equally effective to take Niacin (or any other vitamin) alone, than to take a B-complex that contains the same quantity of Niacin?

I would think that in principle the Niacin could still be effective if taken in a B-complex. However, I think that the form of niacin in most B-complex vitamins is nicotinamide, i.e. the non-flushing type -- so it might be that factor, rather than the presence of other vitamins, that might make B-complex less effective for niacin-treatment of POIS.

Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

Or also compare Niacin with L-Histidine.

http://psychology.wikia.com/wiki/HistamineSexual responseResearch has shown that histamine is released as part of the human orgasm from mast cells in the genitals. If this response is lacking this may be a sign of histapenia (histamine deficiency). In such cases, a doctor may prescribe diet supplements with folic acid and niacin (which used in conjunction can increase blood histamine levels and histamine release), or L-histidine.

if L-histidine works too (prior, like niacin) then it could point towards low histamine at orgasm as a feature of POIS, if you get my drift.

Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

I have been taking 1000mg Niacinamide (not Nicotinamide) and I am told it is a non-flushing type and its been working very well.... at 1000mg dose few hours before.... but I have noted that taking it daily and having O when ever seems also to work decently also.....

And I need to also say AGAIN that my brain fog left once I stopped taking caffeine, no coffee, no softdrink/soda with caffeine, no chocolate.....

However I still suffer from anger, some social withdrawl, and as long as I am on Niacinamide the all over horrible body feelings are down 70%

Had another O and this time I immediately took Benadryl and aspirin. I feel surprisingly good given two Os so close to each other. I'll have to try the green tea/fenugreek.

I took a Benadryl last time I had POIS. It made me really tired and I could tell it stayed in my system for about 2 days, I just took one pill.

Is there anybody here that has heavy heartbeats at night? Seems that especially right before bed I experience heavy heartbeats. It will beat and than stop for a moment longer than beat again but much heavier, than return to a normal heavy heartbeat.

I also get that. I think it's called PVC's. It's usually a benign condition. People get them when they are nervous, or sometimes if you are low in some minerals (magnesium, potasium...).

I get more PVC's when i'm under Pois. I also get more orthostatic hypotension when i'm under Pois.

Thanks for the response, I always wondered if I was alone with this. Maybe I am nervous and just need to relax and not always worry about this condition.

Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

I have been taking 1000mg Niacinamide (not Nicotinamide) and I am told it is a non-flushing type and its been working very well.... at 1000mg dose few hours before.... but I have noted that taking it daily and having O when ever seems also to work decently also.....

And I need to also say AGAIN that my brain fog left once I stopped taking caffeine, no coffee, no softdrink/soda with caffeine, no chocolate.....

However I still suffer from anger, some social withdrawl, and as long as I am on Niacinamide the all over horrible body feelings are down 70%

PS.

Regarding the anger part, I think its just really frustrating not "O'ing" so we cannot get rid of our testosterone. I have built up anger throughout almost all of these days and try to keep it inside. Any little thing will tick me off. My brain fog seems a lot better, to the point where it's probably not even there anymore. It is pretty much gone besides sometimes while I am sleeping.

Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

I have been taking 1000mg Niacinamide (not Nicotinamide) and I am told it is a non-flushing type and its been working very well.... at 1000mg dose few hours before.... but I have noted that taking it daily and having O when ever seems also to work decently also.....

And I need to also say AGAIN that my brain fog left once I stopped taking caffeine, no coffee, no softdrink/soda with caffeine, no chocolate.....

However I still suffer from anger, some social withdrawl, and as long as I am on Niacinamide the all over horrible body feelings are down 70%

PS.

Niacinamide is a synonym for nicotinamide -- so if it is effective for you, this could further indicate that it is not necessarily the flush per se that is the indicator. It would be good for someone to test both the flushing and non-flushing varieties comparatively.

I've got a question: is it equally effective to take Niacin (or any other vitamin) alone, than to take a B-complex that contains the same quantity of Niacin?

I would think that in principle the Niacin could still be effective if taken in a B-complex. However, I think that the form of niacin in most B-complex vitamins is nicotinamide, i.e. the non-flushing type -- so it might be that factor, rather than the presence of other vitamins, that might make B-complex less effective for niacin-treatment of POIS.

Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

But on the other hand, i have read that B vitamins compete with each other for absorption. I mean, if you take too much Niacin, you may downregulate another B vitamin. So, i'm still not sure if it's the same to take 100 mg of Niacin alone, or take a B-complex which includes 100mg Niacin, supposing i could find one with the flushing-type.

So, now we can count at least 3 theories about Niacin:

A) It helps in cases of Histapenia (low histamine). Could be proved if L-Histidine also works for us.

B) It helps because it causes cerebral vasodilation (the same reason XN works).

C) It helps because it helps energy mitochondrial metabolism. This last theory can be proved if we try for a long enough period the two other agents that help energy: riboflavin and coenzyme Q10.

The two last theories (B and C) are the main reasons why Niacin is considered a migraine/headache preventive/abortive.

I've got a question: is it equally effective to take Niacin (or any other vitamin) alone, than to take a B-complex that contains the same quantity of Niacin?

I would think that in principle the Niacin could still be effective if taken in a B-complex. However, I think that the form of niacin in most B-complex vitamins is nicotinamide, i.e. the non-flushing type -- so it might be that factor, rather than the presence of other vitamins, that might make B-complex less effective for niacin-treatment of POIS.

Has anyone on the forum done comparison tests between regular niacin and nicotinamide, to see if the latter has any effect on POIS?

But on the other hand, i have read that B vitamins compete with each other for absorption. I mean, if you take too much Niacin, you may downregulate another B vitamin. So, i'm still not sure if it's the same to take 100 mg of Niacin alone, or take a B-complex which includes 100mg Niacin, supposing i could find one with the flushing-type.

So, now we can count at least 3 theories about Niacin:

A) It helps in cases of Histapenia (low histamine). Could be proved if L-Histidine also works for us.

B) It helps because it causes cerebral vasodilation (the same reason XN works).

C) It helps because it helps energy mitochondrial metabolism. This last theory can be proved if we try for a long enough period the two other agents that help energy: riboflavin and coenzyme Q10.

The two last theories (B and C) are the main reasons why Niacin is considered a migraine/headache preventive/abortive.

I think L-Histadine would be a good test to try. It seems counter intuitive in regards to our auto-immune theory, but I have been thinking about trying it for a couple years now after I felt bad all day after taking claritin one time.

"Researchers are aware of the effects of increased levels of L-histidine, a precursor to Histamine, which can produce sensations of intense warmth that quickly spreads throughout the body. This warming effect is secondary to a release of the histamine that produces a dilation of blood vessels and capillaries, which results in subsequent increase in blood flow. The vasodilatation of the blood vessel is very similar to the flush felt instantaneously during sexual excitement. Orgasm is triggered when histamine is released in the body from the mast cells. These cells function as part of the immune system, but also cause the sexual flush experienced during arousal. For both functions, the active ingredient is histamine. When there is insufficient histamine in the body, histamine production is low and women find it difficult, sometimes even impossible to achieve orgasm. Individuals who release Histamine easily generally do not have difficulty in achieving an orgasm. Pfeiffer, C. 1975. Mental and Elemental Nutrients: A Physician\rquote s Guide to Nutrition and Health Care. Keats. New Canaan:Connecticut."

I'm not sure if i had an allergic reaction to Niacin. The few times i've taken it, i feel something rare in my breathing. It's not severe, as i only took 100mg. Do you also feel something different in your breathing? It's like it's a little more difficult to inhale air. But not by much. Maybe it's just the flush

I think L-Histadine would be a good test to try. It seems counter intuitive in regards to our auto-immune theory, but I have been thinking about trying it for a couple years now after I felt bad all day after taking claritin one time.

Yes, it seems that, even if POIS is related in some way to the autoimmune system, it could potentially be a matter of TOO MUCH histamine or NOT ENOUGH histamine.

And with the niacin, it seems like it could potentially be doing either as well: either using up excess histamine, so that it isn't over-released in a negative way during POIS, or providing extra histamine, so that POIS doesn't cause a negative depletion of histamine.

But, testing L-histamine could potentially help to determine whether one of these possibilities seems more likely. (Although it could also be that neither of them turns out to be the case -- but we'll only know through testing!)

There has been a BIG slowdown in donations for our NORD POIS research fund! Only a valiant few have made donations these past few months. Below, there is a very good but typical story of how a research donation to a fund like NORD can save and greatly improve lives.

In fact, if it were not for Nordnurse (Stefanie) who works daily with rare disease causes, we would still be flailing around, thinking, scheming, supposing and inventing, to find a solution to the POIS problem.

Haven’t we seen enough doctors who don’t take us seriously? Haven’t we seen enough to see that the only ones who care are the effected themselves? Maybe we could FIND the cure ourselves, but we would have NO cooperation in implementing it without the support of some real, peer-reviewed, scientific research.

It’s beyond saying that we must support our research fund -- and must bring it to life! It is an absolutely necessary requirement. All of our effort, time, ideas and concepts are worth absolutely zero without it.

What choices do we have?

We can sit on our haunches, waiting for the money to magically appear. Or – like other groups with rare conditions, we can take the bull by the horns. We MUST do our part to get that basic research started!

Nordnurse sent us an inspirational story recently, and we felt that it would be a good story to share with you all–

”There's a physician on NORD's Medical Advisory Committee (MAC), Dr. Robert Campbell, Jr -- an angel who poses as a human being here on earth.

As a pediatric orthopedic surgeon, Dr. Campbell’s special area of interest is a group of HORRIFIC disorders that begin in infancy and childhood – called “thoracic insufficiency.” Basically, the ribs do not grow, and the baby/child literally and inevitably suffocates to death.

When Dr. Campbell, as a new researcher, applied for a NORD research grant for thoracic insufficiency, back in the late 1980s, he knew that he would have an uphill battle. Having had a first career as an engineer, his proposal was unusual, definitely “outside the box.” Based in solid medicine, he proposed an idea for an expandable titanium rib – a medical device for these fatally ill children.

There were many applications for this one $30,000 grant, which had been donated in full by the desperate parents of a young child who was suffering terribly and facing certain death. NORD’s MAC liked Dr. Campbell’s proposal, despite knowing that it might be very difficult for him to get the type of future funding from government or private industry. Despite this concern, they trusted their appraisal of his proposal’s scientific merit, and awarded that grant to him.

The rest… as they say… is history.

Because of that first basic NORD study, Dr. Campbell later received major funding from industry. He has since patented the titanium expandable rib, and these children no longer die a slow, miserable death. They go on to live their lives!

The expandable titanium rib is now “The Standard of Care” for children with this disorder.

Dr. Campbell joined NORD’s MAC as a senior attending physician and researcher about eight years ago. He was recently honored on Capitol Hill for his unswerving work to save the lives of children with this horrible disorder (thoracic insufficiency).

Fellow POIS sufferers and comrades – we NEED that basic research – and we need those funds – NOW! Our group focus must dramatically change – from speculation to ACTION.

We can and should continue posting our comments, asking our questions, and sharing our experiences. But if we want a way out of the hell of POIS – which can only come from scientific research – we must walk the walk!

The next grant cycle at NORD begins in March 2012. That gives us six moths to raise ~$30,655. Monthly, that equates to ~ 5,100/month. That translates into ~ $50/month from 100 donors each month.

Walking the walk, taking action -- this requires EFFORT. Stefanie knows from experience at NORD that only this kind of personal effort lead to the road of a real solution.

We propose a serious pledges database, where there will be a fixed time of 30 days maximum to register your pledge. This will provide more time over which to amortize any payments. Pledges may be made as a lump sum or divided over months to come.

We require a minimum of donors (100), as we cannot expect a few to pay the majority. Every donor will be granted a place in a VIP area on the SMF forum where all things pertaining to the grant will be discussed, and first information will be disseminated.

Upon pledging the required amount, monthly payments will be begun. Each pledge will be billed (as a formal reminder) at which point his pledge should be converted into an actual donation. Each donor will donate personally to NORD so as to (1) receive any tax deduction and/or (2) maintain anonymity (two issues not covered by other systems such as thepoint.com).

This program was devised as a means to be assertive in the implementation and follow through of the research program, to avoid extra costs and limitations imposed by outside entities and to benefit, through personal management of money and donations by each individual.

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